“Supported, cared for, and deeply grateful”: Phoebe’s story

In the first fragile days of her life, baby Phoebe arrived more than 10 weeks early, facing complications far beyond what anyone expected. Within days, she was transferred to Evelina London Children’s Hospital, where specialists began uncovering the rare genetic kidney condition behind her illness. What followed was a long, uncertain journey through intensive care, major treatments, and many frightening moments.

Through every high and low, Ronald McDonald House Charities UK became a source of comfort and stability for her parents. The Evelina London House gave them a place to stay close, a place to rest and a place to breathe, while Phoebe fought for her life only a short walk away. After months in hospital, and several readmissions during later treatments, the charity remained a constant support.

Now, as Phoebe continues to grow and reach new milestones, her family carries with them a deep gratitude for the House that helped them stay together.

Our daughter Phoebe was born at 29 weeks plus two days. She arrived far earlier than expected and was very unwell. After two transfers between local hospitals, she reached Evelina London Children’s Hospital Neonatal Intensive Care Unit (NICU) at just over one week old. Her blood pressure was extremely high, and doctors quickly saw that something was wrong with her kidneys. Evelina London Children’s Hospital was the best place for her, as it has specialist kidney teams who could help.

After many tests, we learned that Phoebe had congenital nephrotic syndrome, which is a rare genetic condition that affects how the kidneys work. Alongside this diagnosis, she also had all the challenges of being born 11 weeks early. Phoebe spent four-and-a-half months in intensive care. She needed blood transfusions, several surgeries and support with breathing. She had a stoma, which is an opening made on the tummy so waste can leave the body. She also spent months on total parenteral nutrition (TPN), which means receiving nutrition through a vein when the body cannot use the stomach or bowel.

When Phoebe became more stable, she moved to the kidney ward, where she stayed for another six-and-a-half-months, with some stays in the Paediatric Intensive Care Unit (PICU) in between. Phoebe was finally discharged in March 2024, aged 11 months.

We moved into Ronald McDonald House Evelina London a few nights after Phoebe arrived at the hospital. It was truly our lifeline. Parents cannot stay overnight on the intensive care unit, and once Phoebe was on the kidney ward only one parent could stay each night. Being able to stay so close to her made an enormous difference. We live more than an hour away, so the House meant we did not lose precious time travelling. When we received calls in the middle of the night, we could reach Phoebe within minutes.

My husband Adam worked in London, so the House meant he could visit us before and after work instead of facing long late-night journeys home. On weekends he stayed at the hospital, and I could rest at the House knowing I was only across the road. Without Ronald McDonald House Evelina London, we would have spent far less time together as a family.

The House was more than a place to sleep. It was a community. We met other families who understood what we were going through. We shared our worries and victories. We made friends for life. The staff were incredible, always ready to listen and support us, even on the hardest days. We celebrated birthdays, our first wedding anniversary, Christmas and Father’s Day in the House. Ronald McDonald House Charities UK always made these moments special for families like ours.

Practical support also made a huge difference. We could wash clothes, store food and cook meals. Food donations helped when we were exhausted or had no time to shop. We want to thank some of the supporters who made a real impact on us, including Greggs, who often provided lunch, and Marks & Spencer, who donated fresh bread. We are also grateful to the American Women’s Association for their homemade meals and to the Royal Bank of Canada (RBC) for donating meals like Nando’s and pizza. The Christmas and Boxing Day meals provided for families were also unforgettable. Every act of kindness helped us get through some very difficult days.

Since the end of August, we’ve been in and out (mostly in) hospital. Phoebe needed to start dialysis and haemodialysis, which resulted in her unfortunately getting a line infection, needing further treatment. She then finally ended up with peritoneal dialysis, a home-based treatment for kidney failure that uses your own abdomen lining (peritoneum) as a natural filter to clean your blood, which is better for little children. After my husband and I had two weeks of training we only went home for a few days and were back for the first kidney out and then three weeks later the second kidney out. So, we have been back to Ronald McDonald three separate times in the last four months and so very grateful to always have a place close by to stay.

We know we will be back at Ronald McDonald House again in the New Year, when Phoebe receives a kidney transplant from her dad. Ronald McDonald House Charities UK continues to make life so much easier for us. Anyone who sponsors a room at Ronald McDonald House Evelina London should know how much it matters. We’ve always left the House feeling supported, cared for and deeply grateful.